Mirapex Withdrawal Problems

1 Aug

http://forum.parkinson.org/index.php?/topic/10922-going-through-daws-when-getting-off-mirapex-due-to-icd/

I have been going through a transition from Mirapex to Carbadopa/Levadopa (C/L) due to compulsive gambling associated with taking Mirapex. I have been taking Mirapex for nearly ten years and have been experiencing significant withdrawal symptoms in attempting to go from Mirapex to C/L. I have been off Mirapex since December 4th and continuing to have many issues, anxiety, depression, constant nausea, hot flashes, mouth sores, etc, and it is pure hell. I am providing this information in the hopes that other people with Parkinsons who have been using a dopamine agonist (DA) and are having compulsive behavior will be aware of this prior to going down the path I have chosen. I would be happy to discuss my situation with you at any time.

I visited the Mayo Clinic Oct. 24, 2010 , and reducing the Mirapex was a nightmare. I returned on Dec. 29 and the doctor suggested I keep trying to stay off the Mirapex and continue Carbadopa Levadopa. I had returned that day thinking I would return to Mirapex because I could not bear the symptoms any longer. My doctor convinced me to try to continue a few more weeks upon returning to our home. Also as we were departing from his office he casually mentioned reading the attached paper on the Dopamine Agonist drugs (mirapex and requip are the only two.) After returning we looked up this paper and were quite flabbergasted that he had not mentioned this paper previously.

One recommendation is to return to Mirapex to stop the DAWS symptoms that are so awful. It appears that if I return to Mirapex additional major problems could erupt. I have taken Mirapex agonist for 10 years and I understand this builds up in your system so that returning to the drug even ever so slowly could provoke more compulsions or addional compulsions.

So I continue to adjust to the new drugs, Carbidopa-Levadopa 25-100 mg , Stop Stalevo , then Mirapex (not gradual enough, and then my doctor in pittsburgh made some changes. Still, I feel anxious, depressed, with constant nausea, mouth sores and significant hot flashes. I am currently on Wellbutrin to help with the depression but also tried Lexapro. I have tried Lodosyn, Domperidone, Tigan and Zofran for the nausea with no help. I am currently taking Clonozepam for the anxiety but also tried Xanax.

The last recommendation from my neurologist is to start on 100mg amantadine, one per day, for one week. Then go to 2 per day for a week and see how I respond. The hope is that the amantadine will have the same effect as Mirapex in eliminating my DAWS symptoms but will not bring back my previous compulsion when on Mirapex. However, after reading about the side effects and other potential problems with amantadine I am reluctant to do so. HAS ANYONE ELSE HAD MY SITUATION AND SUCCESSFULLY GOTTEN THRU DAWS??? Is there any new data on this? Any help would be appreciated.

ATTACHED ARTICLE (regarding getting off a dopamaine agonist and going on carbadopa/levadopa)

Reducing Dosage of Parkinson’s Drugs Can Cause Symptoms Similar to Those of Cocaine Withdrawal
In a World First, Researchers Identify and Define Dopamine Agonist Withdrawal Syndrome, or DAWS

NewYork-Presbyterian/Weill Cornell Study Explains Difficulties in Tapering Parkinson’s Drugs in Patients With Side Effects Such as Compulsive Eating, Pathological Gambling, Compulsive Buying and Hypersexuality

NEW YORK (Jan. 11, 2010) — New research has shown that reducing the dosage of dopamine agonist (DA) drugs, a mainstay treatment for Parkinson’s disease (PD), sometimes causes acute withdrawal symptoms similar to those reported by cocaine addicts — including anxiety, panic attacks, depression, sweating, nausea, generalized pain, fatigue, dizziness and drug cravings. These symptoms can be severe, and are not alleviated by other PD medications.

For the first time, researchers have defined this phenomenon, which they call dopamine agonist withdrawal syndrome, or DAWS. Led by a physician-scientist at NewYork-Presbyterian Hospital/Weill Cornell Medical Center, the study is reported in the Jan. 11 Archives of Neurology.

“Like cocaine and methamphetamines, dopamine agonists work by stimulating the reward pathways in the brain. For this reason, it makes sense that they would engender similar withdrawal symptoms, particularly in those with high cumulative drug exposure,” says senior author Dr. Melissa J. Nirenberg, associate director of the Parkinson’s Disease and Movement Disorders Institute at NewYork-Presbyterian Hospital/Weill Cornell Medical Center and assistant professor of neurology and neuroscience at Weill Cornell Medical College.

Dopamine agonists are highly effective drugs that are prescribed to many Parkinson’s patients to avoid side effects of the “gold standard” drug L-DOPA, particularly abnormal involuntary movements referred to as dyskinesias. (L-DOPA was perfected by Dr. George C. Cotzias of Cornell University Medical College in the late 1960s; dopamine agonists have been available since the 1990s.) DAs are also FDA-approved for treatment of restless legs syndrome, and used off-label for other conditions such as depression and fibromyalgia. In the United States, there are currently two DAs on the market — pramipexole (Mirapex®) and ropinirole (Requip®, Requip XL®).

In recent years, there have been increasing concerns about DA side effects, and particularly the fact that they can cause uncontrolled, compulsive behaviors known as impulse control disorders (ICDs). ICDs are reported to occur in about 14 percent to 17 percent of PD patients who use these drugs, and also occur in people who use DAs to treat other medical conditions. In 2006, Dr. Nirenberg published research linking the use of DAs to compulsive eating; others have linked the drugs to behaviors such as compulsive gambling, buying, hypersexuality and Internet addiction. Patients are often unaware of these addictive behaviors, or may not discuss them with physicians because they are in denial, embarrassed by their symptoms, or unaware that they are a medication side effect.

“Impulse control disorders stemming from use of dopamine agonists can be detrimental to a patient’s financial, social and physical well-being. Our research identifies another concern — namely that some patients experience severe, even intolerable, withdrawal syndromes when their dosage is reduced. In this context, it’s very important that physicians and their patients use DAs judiciously, and exercise caution when they are tapered,” says Dr. Nirenberg.

Study Design and Findings

In the current study, Dr. Nirenberg and first author Christina A. Rabinak, a third-year medical student at Weill Cornell Medical College, performed a retrospective analysis of a cohort of 93 people with Parkinson’s disease, of whom 40 received DAs, and 26 tapered a DA for any of a variety of reasons — most commonly because of ICDs. Among those who tapered a DA, five patients (19 percent) experienced DAWS. Two of the subjects with DAWS recovered fully, but three of the five were unable to successfully discontinue the drug because of severe withdrawal symptoms. These three study participants are currently living with their ICDs.

The NewYork-Presbyterian/Weill Cornell researchers made several observations about DAWS:
• DAWS only occurred in patients with ICDs, and not in those who tapered DAs for other reasons. However, only one-third of patients with ICDs experienced DAWS.
• Withdrawal symptoms were only alleviated by increasing the DA dosage. Other treatments, including high doses of L-DOPA, antidepressants, tranquilizers and psychotherapy, were ineffective.
• DAWS correlated with cumulative exposure to DAs, with the most severe symptoms occurring in patients with the greatest DA exposure.
• Subjects with DAWS had milder physical disability than those without.

The Message for Patients & Physicians

“DAWS has been difficult to identify because its symptoms are ‘invisible’ — mainly psychological in nature,” says Dr. Nirenberg. In fact, both patients and physicians have mistaken DAWS for a mental health condition such as anxiety or depression. DAWS has also been misinterpreted as a manifestation of PD itself, or of wearing off between doses of medication — something disproven by the fact that the symptoms are not alleviated by even very high doses of L-DOPA.

Dr. Nirenberg recommends that patients “educate themselves about DA side effects, involve family members and friends in monitoring their behavior for possible ICDs, and promptly inform their physicians if they experience ICDs or DAWS.” The authors also provide specific advice for clinicians who use DAs: (1) avoid prescribing high doses of DAs, (2) closely monitor DA-treated patients for signs of ICDs, (3) warn patients of the risks of DAWS, (4) taper DAs at the first sign of ICDs, and (5) closely monitor patients when tapering DAs, particularly those with ICDs. As for future directions, Dr. Nirenberg stated “the most important unanswered questions are how to reduce the risk of DAWS, and how to treat DAWS once it occurs.”

The current study was supported by the Parkinson’s Disease Foundation.
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#2 Dr. Okun

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Posted 02 May 2011 – 06:10 AM
First, please know we are all with you and hope that your situation improves soon.

The Dopamine Agonist Withdrawal Syndrome can be very difficult in a subset of patients. There is one article suggesting amantadine helps and I see you have tried that. We have used clozaril here with pretty good success in severe cases.

I will post for other suggestions.
Michael S. Okun, M.D.
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#3 dipnose

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Posted 02 May 2011 – 09:06 PM
Dr. Okun, on 02 May 2011 – 06:10 AM, said:
First, please know we are all with you and hope that your situation improves soon.

The Dopamine Agonist Withdrawal Syndrome can be very difficult in a subset of patients. There is one article suggesting amantadine helps and I see you have tried that. We have used clozaril here with pretty good success in severe cases.

I will post for other suggestions.

Dr. Okun,

Thank you so much for your feedback. I don’t feel so alone with my issues. I have not tried the amantadine yet (my previous posting may not have been clear). I am concerned about taking it due to side effects and possible withdrawal problems in the future. Having the Mirapex DAWS problem has made me very concerned about trying other meds that could make matters worse. Nausea is one of my worst DAWS symptoms. Before trying amantadine should I try Parcopa? I understand that it may help nausea as well.
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#4 woodbee

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Posted 02 May 2011 – 11:07 PM
Dr. Okun, on 02 May 2011 – 07:10 AM, said:
First, please know we are all with you and hope that your situation improves soon.

The Dopamine Agonist Withdrawal Syndrome can be very difficult in a subset of patients. There is one article suggesting amantadine helps and I see you have tried that. We have used clozaril here with pretty good success in severe cases.

I will post for other suggestions.

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#5 woodbee

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Posted 02 May 2011 – 11:59 PM
Hi

I’m sorry to read about your difficulties changing medications. I experienced DAWS five years ago when I went off Mirapex after only having used it for 6 months. I went off gradually as directed but in spite of that had the worst symptoms I’ve ever experienced, very torturous . ..many like you describe as well as crawling skin sensations that were pure hell. I got through it but it took several days. The young intern I was seeing at a large university hospital was unsympathetic and I believe unaware that this type of withdrawal even happened to people. it was only shortly after this experience that I saw the first reports of DAWS. I really wish I could offer you some hope or alternatives to help you but I can ‘t. This is a serious problem with agonists, one that I hope the medical community will take seriously. At the time I experienced DAWS I wanted to die to escape the horrible symptoms. This is not easy to write about. But it is also the reason I implore movement disorder doctors to please please please help these individuals. The isolation one feels and a sense of being abandoned by the medical community makes it even worse. I sympathize with what you are going through and I hope you will experience relief soon. I hope Dr O will search for more ways of helping you.

With sincere hopes that you recover soon,
Eileen
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#6 netgypsy

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Posted 03 May 2011 – 12:00 AM
Be sure to optimize your dosage of sinemet with your docs help because it stopped my anxiety quite well once I had the right dose. I too went through horrendous withdrawal symptoms and panic attacks and nearly drove my SO crazy. She says she had to be crazy to stay around to help me deal with it. Truly horrible but it will improve so hang in there. I’m totally off agonists YAAAAYYY. Horrible drugs for many people
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#7 Dr. Okun

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Posted 03 May 2011 – 06:37 AM
Optimization of sinemet is a great thing and may help.

Nausea can be treated by adding 25-75mg of carbidopa (Lodosyn) to each dose of sinemet.

Sinemet and Pracopa are exactly the same as far as absorption– one just dissolves in the mouth but its absorption curves in the body are roughly the same.

Domperidone is a great drug for nausea that does not respond to lodosyn.

We have tried amantadine and clozaril for treatment of severe ICD’s and DAWS.
Michael S. Okun, M.D.
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#8 dipnose

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Posted 07 May 2011 – 08:55 PM
Dr Okun,

I am currently on sinemet, 25-100, three times a day. I also take Klonipin, as needed, and Wellbutrin, 150 mg once a day but continue to have many DAWS symptoms. At the suggestion of my neurologist I am considering trying amantadine, starting with 100 mg per day for one week and then 200 mg per day for the second week. My neurologist says if that does not help my DAWS symptoms I should then consider going back on Mirapex and deal with the side effects as best I can.

My quesstion is if I try amantadine for two weeks and then have to go to Mirapex, what will be the withdrawal side effects of stopping the amantadine? Will I potentially have significant withdrawal side effects stopping the mantadine after taking it for this short period of time or can I go straight to Mirapex from amantadine without withdrawal symptoms? I have read that stopping amantadine can cause severe withdrawal symptoms and I am of course very concerned after experiencing the awful withdrawal symptoms from Mirapex.
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#9 dipnose

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Posted 07 May 2011 – 09:53 PM
I am considering going directly back on Mirapex. I realize the potential for ICD exists if I do. Is there any other reason I should not do this??
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#10 Dr. Okun

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Posted 08 May 2011 – 02:39 PM
First question-

Amantadine is a pretty weak PD drug and so far we are not aware of common withdrawal symptoms of going on and off—of course there is not much data–however clinical experience has been ok.

Second, after impulsive/compulsive issues we almost never return to the agonists. We usually go to a drug like seroquel and if that doesn’t work clozaril.
Michael S. Okun, M.D.
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3 Responses to “Mirapex Withdrawal Problems”

  1. pesso August 24, 2011 at 11:11 am #

    I am so sorry to hear all this! Thank you for sharing your experience in the hopes of helping others.

    I was on Mirapex for 12 years for Restless Legs Syndrome insomnia. I stopped taking Mirapex a month ago after stumbling across the information about obsessive compulsive risk taking behavior which I recognized in myself after reading about it.

    I’ve had some success functioning without Mirapex with the following supplements, which perhaps might help you: daily Iron supplement, Vitamin e, 1 tbsp Natural Calm magnesium citrate drink by Peter Gillham, vitamin d3, b complex, folic acid, vitamin k2, SAMe, calcium with zinc, and rescue remedy,

    I wish you relief, health, and peace of mind soon, somehow!

    Tana

  2. Jenna Anderson January 4, 2012 at 9:31 am #

    I’m sorry you are going through this and hope you were able to make it through. Have you?

    You may have an update on this blog – I will search for it.

    I too would like to get off Mirapex for many reasons. I’ve previously read the article you attached – stumbled across it in my research as well.

    I blogged about a few things I am trying to wean myself off Mirapex – diet, certain vitamins, etc. You can read them here – http://www.jennascribbles.com/life-home-family/weaning-off-mirapex/

    I was able to cut down my dosage but not go completely off. I started experiencing panic attacks and other mood issues.

    UGH – why oh why aren’t these meds researched more before being offered?

    I thought I would be dealing with sleepless nights due to jumpy legs – I never dreamed of the mood issues I’d be facing.

    I spoke to a woman studying nursing at a party. She pulled out her drug reference book – a new one. The recommendations for weaning off is to taper off for one week.

    Oh my word – if doctors out there are telling their patients to do this…. heaven help them.

    Jenna

    • pesso January 4, 2012 at 10:06 am #

      Thanks for your note and kindness. I’m sorry for both of us, all of us, going through this. I have gotten off of Mirapex and found another way to handle insomnia. I will post what works for me and hope that it helps you and others, too. All best wishes for your happiness and health!

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